Need Direction after AP

[David C]

Hi Members

I?m at a crossroad that need some direction. Today is my 7^th Week into AP and I guess it?s still too early to talk about improvements. But my condition is advancing so fast that at this point I might need to do something for mobility sake. My normal right knee and elbow use to support the left ones in walking or undressing are now starting to lose its ground. If that?s the case, I?ll need someone with my daily activities. My original rheumy told me to take methotrexate right away or else I?ll be disabled. I mentioned about plaquenil but she said it?ll not work with my condition now. My AP doctor said it?s OK to start either one but will totally be on my own decision. I?m stuck now. I know most on this site actually wean off upon starting AP but are there anyone add on after starting AP or do whatever they can in a bad situation to be functional. I might need to travel to Asia in August. Time is crucial to me now. Any suggestion will be greatly appreciated.

[Kim]

Hey David,

I'm so sorry to hear things are heading south so quickly.  I haven't taken Meth so am no help there and will leave that one to others, but I noticed your Minocin dosage is only 50mg M/W/F.  That is a very low dose, is there a reason?  Are the IVs an option for a quicker response?

kim

[David C]

Hi Kim

I was surprise also to be intructed by my ap doc (NY) to take only 50mg MWF whereas I've already been on 100mg minocylcine everyday until last week changed to MWF. I just got the brand name yesterday paid out of my own pocket $84 per 12-50mg pills, havent started taking yet. Also have ordered from Canada but could only get 3 month supply of 36-50mg pills & paid $10 shipping. So was ready to continue this 3 days bid to hopefully reduce the herxing. I asked AP doc why so low but she said she likes to take things slow and works things up. I dont really see anyone with such low dose unless they are in remission & want to wean off that's what I can think of. But when comes to MTX and plaquenil, she leaves it up to me to decide. :headbang::headbang:. I think maybe I should start with 2 mino per day.

At my condition, I think might be a good idea to get IV's but not many will do it. Might have to travel.

 

david

[Maz]

[user=1184]David C[/user] wrote:

My original rheumy told me to take methotrexate right away or else I?ll be disabled. I mentioned about plaquenil but she said it?ll not work with my condition now. My AP doctor said it?s OK to start either one but will totally be on my own decision. I?m stuck now. I know most on this site actually wean off upon starting AP but are there anyone add on after starting AP or do whatever they can in a bad situation to be functional. I might need to travel to Asia in August. Time is crucial to me now. Any suggestion will be greatly appreciated.

David, so sorry to hear you're in such a bad way. Although this may be no comfort to you, at all, I was also in a very bad way in the early months and it took a long time before things started to turn around in very slow, gradual increments.

I'm wondering the same as Kim….did Dr T prescribe the 50mg MWF to you? He's usually a Harvard Protocol kind of guy (100mg twice a day). Not saying that's better or worse – every RAer is unique and some do well on one protocol and others do better on the other. I tend to wonder, as Kim has done, if IVs might be a nice adjunct for you. LVento is seeing a Dr W in NJ for her IVs. You might like to connect with her to get her impressions of this doc. He might be a bit closer for you than Dr M in MA. 

All in all, it can be very unnerving to hear doctor proclaimations that give us such dark predictions about the future. What it may come down to in your decision is whether you need to function or not. This isn't a failing…you're a guy and need to make a living to support your family. You aren't alone…there are a number of folk here who have begun other DMARDs or a biologic after starting AP. For some, it's a question of needs-must…and not a question of “either/or”…you can still do both AP and a DMARD. I think if I was having to choose, I'd try plaquenil first, in either case, DMARDs take time to kick in (biologics tend to be faster). Neither mtx or plaquenil will be a guarantee of preventing joint damage – for some they work well and for others not so good. So, the doctor who told you you'd be disabled if you didn't take these drugs is making the assumption they work in every case, which is a bit of an exagerration.

If time is crucial to you now, as you need to travel in a few months, then working with Dr T to get you to a place where you can function with an added DMARD is probably of the essence. In the meantime, you could also give yourself the option of looking into IV therapy, too.

AP does work….it's just that for some people it takes a lot longer. You're going to need to weigh your options, but staying on AP whatever else you may add is a good decision, as you may find you will be able to wean later, just as others here have done.

Wishing you all the best, David, in your decision-making progress.

Peace, Maz

[David C]

Hi Maz

It's Dr Y (NY) who's prescribed that dose to me. I guess the reason is because she's not an expert in RA so it's time for me to move on. I will definitely try Dr W in NJ to discuss about IV's. Maz, if you have the info, can you PM me his contact info just in case I could not get hold of LVento. Thanks

 

 

David

[Maz]

David, will send you a PM with Dr W's contact info in a few mins.

Peace, Maz

[JBJBJB]

you may consider to see Dr S in Iowa. Perhaps you need more IV Climadycin (spelling)…. or more aggressive AP treatment…… to bomb those mycoplasma BS.

 

 

[David C]

Since I have ordered a bunch of 50mg tab minocin, I wonder is it the same to take 2 pills of 50mg Minocin as 1 pill of 100mg Minocin ??? 

[m.]

When I went from 50 mg Doxy MWF to 100 mg MWF, I took the 100 in a divided dose.

[JBJBJB]

Dave,

First of all, I am not a doctor…

You may want to gradually increase your dosage. Like if you would add 50 mg every other day for the first week, and add another 50 mg for the following week….so that you won't get a big herxing effect. It'd give your body some adjustment….

My 2 cents

JB

 

[David C]

I think I got it thanks 🙂

 

David

[davew]

Hi David..

I am not much of an expert at this, but when I read the thread, I think Maz has hit upon a reasonable solution. Addressing the inflammation will allow the AP to work better and many of us need to be on other supplemental therapies to handle that until things get better.

Be it DMARDS, MSM, prenisone or whatever, it will provide some relief and give a better working environment for the mino.

Best wishes and I certainly hope that things improve soon.

Dave

[Susan LymeRA]

David,

If you have to do something for pain and inflammation, try plaquenil first.  It is the safest of the rheumatoid drugs.  The only listed side effect is vision issues that are very rare.

My understanding of methotrexate is that it does NOT stop joint damage.  Biologics, on the other hand, do stop joint damage.  Both DMARDS and Biologics have serious side effects.

What improved my pain  quickly was a diet change.  Check out “Hope for Arthritis” at http://www.drmcdougall.com.  He supports a vegan, low fat diet and claims you can try this diet for 2 weeks.  In that short time period, you should experience significant improvement in pain and inflammation.  If you do, that indicates leaky gut issues complicating your RA.  If you do not see significant improvement, then LGS is probably not your issue.

The vegan diet also takes you off dairy.  I saw 50% improvement in the 2 weeks.  Later, a doctor tested me for food allergies.  Turns out I am reactive to dairy and soy proteins.  The vegan diet eliminated one of my triggers.  It really helped!

I also test high in heavy metals and high titers for a number of bacterias and a bad parasite called babesia ducani.  The doctor is focused on killing this parasite.  She insisted I go on Enbrel even though I was having very little pain or inflammation.  She said when she started me on medication for babesia, it would flare my joints.

I have had issues on the Enbrel.  It really does stop all inflammation hence all pain.  I love that part.  But at the lowest recommended dose, I get sick with respiratory illnesses.  So I am currently taking 1/2 the lowest dose.

On Mar 9, we began Mepron which is the drug of choice for babs.  However, it conflicts with tetracycline drugs so I had to stop the doxycycline.  30 days later, I still feel really good but my bloodwork has skyrocketed.

I speak with my doctor Monday but I'm pretty sure she is going to tell me to increase the Enbrel.  I am asking how bad would it be to take the AP and the Mepron together. 

Only time will tell and each of us are unique.  My doctor believes it is more important for her to know the patient that has the disease than to know the disease that has the patient.

If you have to use biologics, do so.  Avoid steriods.  Try plaquenil first to see if it works.

JMHO

Susan

[David C]

Susan

Thanks for the suggestion. I did noticed 2 ocassions which I think was related to my gut. First time was when I had to fast for colonoscopy and the other was enema colon cleansing. Both did give me relieve of pain in some degree. Also notice lemon juicing and epsom salt bath helps. So will start working in that direction. Hopefully all this will help the AP to reverse my condition. By the way, how soon does plaquenil works after starting intake?

 

David 

[Susan LymeRA]

David,

It will vary from person to person.  Don't you find it interesting that an antimalarial drug and an antibiotic help with RA?  Yet, the rheumies don't give serious consideration to ongoing infectious triggers.

 

 

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